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Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Author

Listed:
  • Gemma Pearce

    (Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK)

  • Lauren Bell

    (Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK
    Coventry City Council, Coventry CV1 2GN, UK)

  • Paul Magee

    (Centre for Future Transport and Cities, Coventry University, Coventry CV1 5FB, UK)

  • Sally Pezaro

    (Research Centre for Healthcare and Communities, Coventry University, Coventry CV1 5FB, UK)

Abstract

Individuals living with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) have reported feeling discredited and unsupported by healthcare professionals. However, the level of knowledge about hEDS/HSD among maternity staff remains unknown. Informed by patient and public involvement, this research aimed to investigate maternity staff’s knowledge and confidence in supporting people with hEDS/HSD, examine people with hEDS/HSD’s experiences of perinatal care, and co-create tools to help maternity staff support people childbearing with hEDS/HSD. Two online mixed-methods international surveys were completed by childbearing people with hEDS/HSD (N = 955) and maternity staff (N = 307). This was followed by the co-creation of three tools with 17 co-creators and a design team. Two main qualitative themes were identified through thematic analysis: (1) a need for recognition of hEDS/HSD in perinatal care and (2) the delivery of appropriate individualised perinatal care. Quantitatively, people with hEDS/HSD perceived maternity professionals to have a low level of knowledge about the conditions. Respectively, maternity staff reported low levels of confidence in supporting people with hEDS/HSD. The co-created tools provide applicable outputs for both education and practice and include an i-learn module hosted by the Royal College of Midwives, a tool for perinatal records, and infomercials.

Suggested Citation

  • Gemma Pearce & Lauren Bell & Paul Magee & Sally Pezaro, 2023. "Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders," IJERPH, MDPI, vol. 20(20), pages 1-16, October.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:20:p:6955-:d:1264514
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    References listed on IDEAS

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    1. Gemma Pearce & Lauren Bell & Sally Pezaro & Emma Reinhold, 2023. "Childbearing with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders: A Large International Survey of Outcomes and Complications," IJERPH, MDPI, vol. 20(20), pages 1-15, October.
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    Cited by:

    1. Gemma Pearce & Lauren Bell & Sally Pezaro & Emma Reinhold, 2023. "Childbearing with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders: A Large International Survey of Outcomes and Complications," IJERPH, MDPI, vol. 20(20), pages 1-15, October.

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